Mary Chapman, features writer —

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

With a stem cell transplant (SCT) being a potentially curative treatment for sickle cell disease (SCD), a blood disorder that disproportionately affects Blacks, a donor registry is encouraging more African-Americans to join its ranks. Be The Match, the world’s largest and most diverse marrow registry, has opened…

While it will be entirely virtual this year, the 7th Annual Walk With the Stars & Move-A-Thon is taking place July 11 to raise awareness and money to fight sickle cell disease (SCD). Presented by the Sickle Cell Disease Association of America (SCDAA), the signature 5K national event is…

Supporters are poised to mark World Sickle Cell Day, observed each June 19 to raise awareness about the red blood cell disorder, and to raise funds to fight it. Across the globe, supporters will participate in activities such as wearing red for sickle cell disease (SCD), sponsoring a…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Global Blood Therapeutics (GBT) is taking proactive measures to support public health efforts and sickle cell disease (SCD) patients during the global COVID-19 pandemic. To help stem the spread of the coronavirus, the company is backing public health strategies, including social distancing. Specifically, GBT is temporarily prohibiting all field…

Record numbers of patients and advocates from across the state of Georgia — which has the nation’s fourth-highest number of people with sickle cell disease (SCD) — turned out recently for the annual Sickle Cell Day at the State Capitol. The day’s annual meeting with legislators and healthcare providers…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the potential of gene therapies in genetic disorders such as sickle cell disease. Comprised of industry leaders, scientists, and patient advocates, the IGT’s overarching goal is to set the foundation for a modernized regulatory…